Measure 8.1: Increased number of studies involving people with lived experience of dementia in all stages of publicly funded research projects, including people from First Nations, CALD and other diverse communities
Lived experience refers to the direct experiences of a person and the knowledge that they gain from it. Increasing research involvement of people with lived experience (including patients, consumers and their families) is based on the concept that people affected by research have the right to actively participate in it. This is particularly important for groups at higher risk of developing dementia or facing barriers to equitable access, such as Aboriginal and Torres Strait Islander (First Nations) people and culturally and linguistically diverse (CALD) people.
There is currently no practical way to measure the number of studies involving people with lived experience of dementia—that is, people living with dementia, their carers and families. However, we can examine national research guidelines and grant requirements that specify the inclusion of lived experience to gather relevant insights. If other data become available in the future, they will be considered for reporting.
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Indicator
National research guidelines that require lived experience involvement.
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Baseline value
Partial achievement
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Latest value
Baseline value only
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Progress
To be provided in future updates
Lived experience involvement is required for all stages of research (from planning to dissemination) involving First Nations people under the following guidelines:
- Ethical conduct in research with Aboriginal and Torres Strait Islander Peoples and communities: Guidelines for researchers and stakeholders (NHMRC 2018)
- The Australian Code for Responsible Conduct of Research (the Code) (NHMRC 2018)
- Code of Ethics for Aboriginal and Torres Strait Islander Research (AIATSIS 2020).
Lived experience involvement is recommended under the:
- Culturally and Linguistically Diverse Dementia Research Action Plan (NHMRC 2020)
- Strategic Roadmap for Dementia Research and Translation (NHMRC 2019).
Lived experience involvement is also recommended under general guidelines (not limited to dementia research) such as via the Statement on Consumer and Community Involvement in Health and Medical Research (NHMRC 2016).
Overall, the AIHW’s assessment is that there is partial achievement of this indicator, as all guidelines and grants relating to dementia research in Australia do not currently require lived experience at all stages of research.
For full details of the guidelines examined and criteria used, see the Technical notes.